'New Thinking on Living with Dying': Research Network

“与死亡共存的新思维”：研究网络

• 批准号: AH/J008427/1
• 负责人: Susan Pickard
• 金额: $ 3.07万
• 依托单位: University of Liverpool
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2012
• 资助国家: 英国
• 起止时间: 2012 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=AH%2FJ008427%2F1
• 关键词: New; Thinking; Living; Dying; Research

To answer the question 'can we improve the well-being of people with life-limiting illness' we propose to establish a network of researchers and clinical practitioners and to hold three workshops, three public events and one Patients' Forum. Radid advances in clinical care have extended life expectancy in life limiting and non-curative illness. As a result of the extension of life expectancy, poor prognosis can mean living with dying for a number of years. Patients with life-limiting illness report a low quality of life and high levels of anxiety or depression. This raises two significant challenges: How can subjective well-being be enhanced for this cohort of patients? Can we develop an appropriate structured clinical response to what are often existential worries. Workshop: Thinking about Dying? (20 participants)The question for this workshop is: 'can we live 'right up to death'?'1. Do cross-ethnic, cultural and religious perspectives provide new ways to frame living with dying?2. Does it make sense to talk about well-being during life-limiting illness?3. How personal is 'my death'?Adriana Cavarero invited to give public lecture (120 audience)Workshop: Mental Health and Living with Dying ( 2 day event: 20 participants in workshop / open registration (£30 to cover cost))The problem for this conference is: 'how can we map well-being during life-limiting illness?'. Questions include:1. How is the sense of 'who I am' unsettled at this time?2. What is the relationship between remorse, loss, guilt, shame, and fear to life-limiting illness?3. How can we can accommodate new identities, bodily shapes and somatic capacities at this time?Arthur Frank invited to give public lecture (120 audience)Workshop: The Clinical Model of Care (20 participants)The problem for this will be 'does the current clinical model adequately address the needs of patients living with dying?'. Questions for the workshop include:1. Do we have the right level of understanding and knowledge of the needs of this cohort of patients?2. What is the role of therapy in care?3. How might we adapt communication practices to make them more appropriate?The following public events aim to involve patients in the development of new material and 'softer' approaches.Food for Thought:Reading as TherapyThis session will be organised by the nationally recognised 'Reader Organisation'. It will involve piloting a range of suitable reading material. 100 participants. DaDa Festival: Changing BodiesDrawing on critical disability theory, this session at the DaDa festival will deal with how identities changes during this period and ask how we might learn to live with changing body shapes and capabilities. Expected footfall 120 (capacity of the Bluecoat) and web streaming of content. Stimulus session: Encounters with NatureThere is already empirical research to show the importance of encounters with nature during times of trauma; in particular when living with dying. Working with Ness Gardens and the Sefton Allotment Movement we will investiage how to translate existing empirical research - that encounters with nature significantly enhance well-being - into practice. These patients have altered capacities, can often be tired and unable to have sole responsibility for an allotment or garden. By sharing allotments, patients can achieve the benefit of encounters with nature without feeling it a burden. 30 people involved in the workshop then a rota of patients will be established.Patients ForumTo feedback results from previous sessions and to test the usefulness of patient material developed during the previous sessions.By the end of the project we expect to have collated personal stories to be included on the website and as a publication 'Cancer Stories'; to have produced two journal articles and patient material as well as policy on the role of nature in non-curable

为了回答“我们能否改善患有限制生命的疾病的人的福祉”的问题，我们建议建立一个研究人员和临床医生网络，并举办三个研讨会，三个公共活动和一个病人论坛。临床护理的快速进步延长了寿命有限和非治愈性疾病的预期寿命。由于预期寿命的延长，预后不良可能意味着与死亡共存数年。患有限制生命的疾病的患者报告生活质量低，焦虑或抑郁水平高。这提出了两个重大挑战：如何提高这一队列患者的主观幸福感？我们能否对通常存在的担忧做出适当的结构化临床反应？工作坊：思考死亡？(20这个研讨会的问题是：我们能活到死吗？'1.跨种族、跨文化和跨宗教的视角是否提供了将生与死联系起来的新方法？2.在限制生命的疾病期间谈论幸福感有意义吗？3.“我的死亡”有多私人？阿德里安娜卡瓦列罗邀请给公开讲座（120观众）研讨会：心理健康和生活与死亡（2天的活动：20参加研讨会/开放注册（£30支付费用））本次会议的问题是：“我们如何映射幸福在生命限制疾病？'.问题包括：1.“我是谁”的感觉在这个时候是如何不稳定的？2.悔恨、失落、内疚、羞耻和恐惧与限制生命的疾病之间有什么关系？3.我们如何能在这个时候适应新的身份、身体形状和身体能力？亚瑟弗兰克邀请给公开讲座（120名观众）研讨会：临床护理模式（20名与会者）的问题，这将是“目前的临床模式是否充分解决病人的需要与死亡？'.研讨会的问题包括：1。我们是否对这组患者的需求有正确的理解和了解？2.治疗在护理中的作用是什么？3.我们如何调整沟通实践，使其更合适？以下公共活动旨在让患者参与新材料和“软”方法的开发。思考的食物：阅读作为治疗这一会议将由全国公认的“读者组织”组织。这将涉及试点一系列合适的阅读材料。100名参与者。达达节：根据关键残疾理论，达达节的这一部分将讨论在这一时期身份如何变化，并询问我们如何学会适应不断变化的身体形状和能力。预期客流量120（Bluecoat的容量）和内容的网络流。刺激会议：与自然相遇已经有实证研究表明，在创伤时期与自然相遇的重要性;特别是当与死亡共存时。与尼斯花园和塞夫顿分配运动合作，我们将研究如何将现有的实证研究-与自然相遇显着提高福祉-转化为实践。这些病人的能力发生了改变，经常会感到疲倦，无法单独负责一个分配或花园。通过分享分配，患者可以获得与自然接触的好处，而不会感到它是一种负担。30人参与研讨会，然后将建立一个病人的轮值表。病人论坛从以前的会议反馈结果，并测试在以前的会议期间开发的病人材料的有用性。到项目结束时，我们希望有整理的个人故事被列入网站和出版物“癌症故事”;已经产生了两个期刊文章和病人的材料，以及政策的作用，自然在不可治愈的，